Pages

Saturday, 4 June 2016

Facebook groups

I recently joined a transplant group on Facebook that, turns out, is quite intense about what people can discuss and who is allowed to join. I feel like I've joined some exclusive club except it's not that exciting. I think the purpose of the group is to have a community where people who have had a lung transplant or who are about to have a transplant can talk about their woes and ask any questions without having people yell at them for any reason.

Although one of the many rules is not to give medical advice (along with my favorite rule that you can't post motivational quotes unless you discuss why it means something to you...that rule cuts down significantly on the "you may not be able to choose your ship but you can adjust the sails" nonsense), most of the questions are people asking about certain medications or symptoms that they are experiencing.

The other popular topic which, thankfully I'm not a part of, is around Medicare and Medicad or fundraising as most of the people are American. Thankfully I have nothing to add to that conversation, I really appreciate our medical system.

It felt like a good time to join a transplant group. Maybe I should've joined during my long wait in Toronto but at the time I a) didn't know the group existed but b) even if I had known, I'm not sure that I would've wanted yet another thing in my life to be centered around the transplant. It was the center of my life and I didn't need yet another reminder of what I was going through. Now I feel like I'm finally at the point where like the lung transplant (and cancer) doesn't have to be the main focus of everything so it's not as repetitive to chat about it with people outside of the hospital.

I don't know if that makes any sense. I guess what I mean is, now that I'm no longer driving to Halifax almost every week and chatting with nurses all the time about my transplant or cancer, I have energy to read about the transplant problems and questions from strangers on the internet.

However, since joining the group, I've come to realize how intense some people and clinics are post-transplant. It's like some clinics want to do the transplant and then have the person live in a bubble for the rest of their lives. No tap water! No pets! No bonfires or woodstoves! No candles! Wear a mask when you're in public! Wear a mask around siblings with CF! But then other people, like me, comment that they weren't told any of that by our clinics so maybe just relax a little bit.

I understand being careful and cautious and I definitely am way more now than before my transplant but there is 'being careful' and then there is refusing to do anything that gives your life meaning. One of the things that has been discussed a few times is whether someone post-transplant should garden. Some centers have told people outright "No!!," others (like Toronto) say it's okay as long as you wear a mask and the soil is wet first (to minimize the risk of inhaling any aerial spores), and then other people say they've been told it's fine and garden without any protective gear. I've decided to go with group B (Toronto) and continue to garden but with a mask as it's something that I love and, really, what's the point of everything I went through if I can't do the things I love.

With that in mind, today Isaiah and I planted our plots at the community garden. In a month we'll be eating spinach! And in two months, hopefully some peas! I also have a few containers at home even though in March I said I was only going to plant spinach and lettuce at home. Yeah...that lasted for about as long as it took to buy a bag of supersoil. I do have the spinach and lettuce at home but also somehow ended up with a tomato plant, cucumber, ground cherry, and hot pepper.